In 2017 Shane was selected as a recipient of the Bobby Jones Open College Scholarship. My Chiari Story
Christine has been involved with ASAP for many years. She holds awareness events, fundraisers and attends the conference. Read her personal story here.
Parents find information when one son is misdiagnosed that prepares them for another son’s diagnosis years later. Click here to read more.
One Of Those Happy Stories
This story is Meg’s journey with Chiari and how one can overcome the worst.
Helping to make a difference in the lives of those affected by Chiari and syringomyelia, Maria held a fundraiser September 28th at the Acme in Doylestown, Pa. She raised over $450 for research!
By Lisa B
July2010, Maren went to a friend’s house. While playing on a trampoline, she became very light headed. Her vision blurred and her head began to hurt. Her brother drove to pick her up. As soon as she arrived home we knew something was very wrong. We took her to an Urgent Care where she became much worse with extreme head pain and trembling. She then began having seizure activity and they took her by ambulance to Children’s Hospital in St. Paul, MN.
She was there they noticed the Chiari on MRI and diagnosed her with mycoplasma. This usually causes walking pneumonia but for Maren it caused neurological issues. They said it was because she was “compromised” neurologically due to the Chiari. We tried various meds and spent most of the following year in the ER monthly or even biweekly. She missed 42 days of school and had to leave ALL of her sports. It was agony for an outgoing, athletic, energetic girl.
Even going out with friends became difficult. She spent another week in the hospital in May where it became apparent surgery was likely the best option. They tried injections above the eyes, at the back of the neck and shoulder. The lidocaine took the pain away for only for a few hours. Her MRIs showed a small Chiari. It wasn’t severe but, as every neurosurgeon I have spoken with has said, the herniation can be extreme and not be symptomatic or small and be extremely debilitating. They did a fluid flow study and there was a compromise of the fluid flow. Her pain was ENDLESS.
Her father and I hardly recognized her. I cannot describe to you, unless you have been there personally, or have been a parent or loved one of a chiarian how it rips your heart out. Our daughter lived in extreme pain and we could do nothing. Pain meds rarely helped unless intravenous at the ER for an hour. Her pain was at the base of the skull and radiated forward. Her neck and back hurt more as time went by. She had a few minor issues swallowing, she was dizzy and her equilibrium was getting more off as time passed. Her “seizure like activity” was agony to watch and frightening for her. We had seen Mayo early in the Fall and now in May of 2011 we were ready to look at surgery. We met with two of the Twin Cities most reputable surgeons. They both said surgery would likely help and they felt it should be done ASAP. Her surgery was performed July 29 of this year.
In the hospital things went quickly downhill though from a surgical standpoint the surgery itself was a success. They did patch the dura, remove a portion of the descended tonsils, part of the top vertebrae and shaved down the inside of the skull- invasive but fairly typical surgery. However, Maren had fluid quickly build in her lungs. As the intravenous meds built in her system she started having violent reactions to the medications ranging from horrible itching to the point where she caused her own skin to bleed to hallucinations and extreme nausea. To combat these issues doctors tried to reduce her pain medications. Her father and I had to watch her scream in agony and we honestly didn’t recognize the child in that bed. At day ten we turned the corner and she was discharged on day 11 remembering almost nothing. Thank God. The following two weeks were brutal but at one month post op she was able to handle light and actually went outside to sit on our front porch. I hadn’t seen her enjoy the sunshine or any type of light for almost a year.
Our child has been given back to us. She has no pain except the normal post op stiffness at the days end. She is attending school and social events. We went to Lincoln, NE this past weekend to walk in an awareness walk for Chiari and she walked the entire two miles. Naturally after that she was very tired. We can’t let her overdo it. At the walk she was able to talk with other children who I really think were inspired by her. It is our deep hope that somehow we can inspire others, support others, and make a difference. No one deserves to live in the darkness of constant pain.
I attached a picture of Maren at one month post op sitting on the porch. It had been a year since we had seen that smile.
It all started for Bill after a motor vehicle accident in August of 1995. After being released home from the hospital, he quickly returned to work but the problems were obvious: forgetfulness, leaving his vehicle running in the parking lot, passing out at his desk and car, tremors, migraines, personality changes, anger, then a seizure.
Doctors suggested it “was all in his head”, but Bill kept searching for answers. Finally he was diagnosed with syringomyelia. Shortly therafter he underwent surgery and with the help of a team of physicians, is still learning to cope.
Bill has many serious challenges including continuing pain, bowel and bladder dysfunction, lack of sensation, and a host of skin problems, to name just a few. He has a neuro stimular for his bladder and a percutaneous cecostomy that helps with bowel functions. He says,”Life goes on”.
Bill lives in Alaska with his wife and kids and his hobbies include: electronics including repair, antique autos and woodworking. He is also active in his local church.
Kimberly was diagnosed at the age of three with idiopathic syringomyelia. She underwent a major surgery to have a syrinx shunt placed in 1999 but her relief was short lived. After consulting with a more experienced neurosurgeon, the family learned that Kimberly actually had Chiari malformation and a tethered cord which were the cause of her syrinx. Once these conditions were treated, her syrinx decreased significantly. Kimberly has a VP shunt for pseudotumor cerebri and she has been diagnosed with osteoporosis and Ehler-Danlos syndrome. She lives with chronic leg pain and uses a wheel chair to get around more comfortably. Her life changed dramatically in 2005 when she got her assistance dog, Lace. Listen to Kimberly describe how Lace has helped her.
Dana lives in Connecticut and was diagnosed with syringomyelia from C-5 to conus in June of 2008. Her colorful hat hides a shaved head. Severe head pain had her literally “pulling her hair out”, so she finally gave up and shaved it off.
She has a wide variety of symptoms including neck, arm, and back pain, numbness, hand swelling, short term memory loss, fluctuations in blood pressure and heart rate, dizziness and fatigue. Currently, she is still waiting for further neurosurgical consults.
Keegan and Kaylee
This brother and sister have something in common after all! Both have the same diagnosis. Keegan was diagnosed at the age of eight with Chiari malformation and syringomyelia. He was born with Hydronephrosis, an extra digit, benign heart murmur, allergies/asthma/a food allergy, sleep apnea, and restless leg syndrome. He had decompression surgery in June of 2008.
Kaylee is the older of the two but was diagnosed after Keegan. She was diagnosed with Chiari at age 11. She had a decompression surgery in December of 2008. Prior to surgery, she had daily headaches, motor skill issues, dizziness, blurred vision, urinary frequency/urgency issues, intolerance to heat, and numbness/tingling/pain in her limbs. Today, both kids are doing fairly well.
Glenna has had scoliosis for as long as she can remember. It was never much of a problem until Christmas Eve 2004. Suddenly, out of no where, Glenna experienced the most excruciating pain she’d ever had. It started in her spine and wrapped around to the front of her rib cage, up to her neck, and seemed to “attack” her left shoulder. She says, “The pain was so intense that I thought I was going to die – literally.”
After consulting with several neurosurgeons, she was diagnosed with idiopathic syringomyelia. She has not had surgery and currently is being treated at a pain clinic. It took her a couple of years before she could finally wrap my mind around what was going on and accept it. She says, “I don’t dwell on what might or might not happen in the future. I live each day the best I can and remember that each day is a gift and there are no guarantees.”
Roz was diagnosed at the age of 48 with both Chiari and syringomyelia. She had a decompression surgery in 1999. The surgery was successful in providing relief of her debilitating headaches. She still has a syrinx and manages her remaining symptoms with the help of a pain specialist. Roz is a regular participant on the ASAP message board and enjoys answering questions for people when she can. Over the years she has learned how to cope with living with the uncertainties of a chronic disorder. She says, “more worry means more pain. What helps me cope is to focus on something else and try to get outside more.”
The Kelly Family
For the Kelly family, Chiari and syringomyelia are a family affair. It took 20 years for mom, Jennifer, to finally receive a diagnosis of Chiari after years of being dismissed by various physicians. She lives in New York with her husband, Tom, and children: Michael, Katie, and Gracie.
Although she was told it was very unlikely her children could be affected, Jennifer had a nagging suspicion they were. She had to fight to get MRI’s for her children, and it was then that her worst fears were confirmed. All three had the condition. Gracie, the youngest, was the most seriously affected. She had a dangerously large syrinx and needed immediate surgery. Today, mom and two of her children have undergone surgery for the condition. Jennifer and her family continue to advocate for greater awareness and research. Watch the video below and hear Jennifer share the struggles she has faced.